Transcript: How not to tell someone they have Parkinson's

This is a full transcript of How not to tell someone they have Parkinson's as first broadcast on 23 January 2020 and presented by Harry Low.

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[Music]

HARRY -Hello, this is the Ouch podcast with me, Harry Low. Today we're lucky to be joined by self-described sports nut, Dave Clark, who has just entered his fourth decade as a broadcaster. He's spent more than 20 years in front of the camera for Sky Sports, covering everything from boxing to badminton, World Cup finals to Olympic Games. And most recently becoming synonymous as the face of darts. Almost nine years ago to the day the award winning journalist received a diagnosis that would change the course of his life. Dave Clark, welcome to the Ouch podcast.

DAVE - Hello. Thanks for having me on.

HARRY -What was that diagnosis?

DAVE - I got diagnosed with Parkinson's disease, which was a bit of a shock. It was 26th January 2011, and I'd noticed a few things: a childhood squint had come back, which was a bit weird, I thought I'd got rid of it forever; and the side of my face was a bit droopy; and my hand wasn't working properly. My thumb was sort of…I could claw like a Lego hand. It was really strange. And I was noticing that I was just struggling to think occasionally. My brain was a bit fuzzy. I wondered what the heck was going on. I went to the doctors and they said, 'you're fine, it's definitely not Parkinson's'.

So, I paid for a private consultation with a Parkinson's expert, because my dad had Parkinson's, and there is a hereditary element to it, and yeah I was told I have Parkinson's that day. I went away, couldn't quite believe it. I thought my world was at an end. He said two or three years I could carry on broadcasting. That was nine years ago; I'm still on the telly, and proving everybody wrong really. But my kids were seven and four at the time. It was a tough time. I thought it was all over. But I carried on fighting and here I am today.

HARRY -In the past you described it as a brutal condition. 145,000 people in the UK have this.

DAVE - Yeah.

HARRY - In what way is it brutal?

DAVE - It eats away at you. Every month it throws another problem your way. At the moment I'm all right, my meds are working, my hands are working fine, but some days I can hardly walk. If I haven't taken my meds or my meds aren't working for some reason I sit in a chair and I can hardly move, it's that bad. But somehow when I present the darts the symptoms disappear, the adrenaline kicks in and I do it. But there will come a day when it will stop me doing what I love, which will be a sad day but I'll think of something else to do.

HARRY - Take us back there then: you're walking away, you've had the diagnosis, what are you thinking? What are you feeling?

DAVE - It was a really weird feeling actually because you don't get a lot of support. The guy that told me did it in a really bad way. He said, 'have you got a big mortgage? How many kids have you got? Sorry to say you've got Parkinson's'. And then gave me a prescription for some meds. A, it was too soon to go on the meds. B, that was a lousy of telling it, as if he thought he was god, you know. And I saw him a couple of times after that. You've got the power to change the specialist you're with, and he was wrong for me. The guy I'm seeing now a brilliant guy. But it was a horrible way of telling me, this god-like complex that he had that he thought ask about your mortgage and your kids.

That was a very negative day for me. I walked away from the specialist with a prescription, and walked across Wimbledon Common and tears were running down my eyes. But the sun was shining and I thought, the sun's going to shine for a bit longer yet. So, I went to the pub with my wife, very upset, and then I thought I've just to get on with this. I allowed myself 24 hours to feel down. And the first three months I'd got Parkinson's were probably the most symptomatic because my body was in shock and it really affected me. But after that I started doing exercise, walking, feeling more positive. The worst moment is diagnosis and then the three months afterwards I think.

HARRY -So, would you say three months was the time it took for you to fully digest this news?

DAVE - I don't know whether you ever fully digest it. You think about it occasionally. The danger is looking too far into the future. The first three months I was googling bungalows and stuff because I thought I wouldn't be able to get up the stairs, but nine years on I can still manage the stairs easily. But you can get in a very negative place. I was thinking grab rails around the toilet and wheelchairs and all sorts of negative things were going through my mind. I don't think about that anymore. I don't look too far into the future. I just live in the now and if I look into the future it's because I've got something exciting planned.

HARRY - You found out at the same age as your father that you had the disease.

DAVE - Yeah, 44. It didn't end well for my dad. He was a sales rep in Bradford and people were accusing him of turning up drunk to meetings and stuff. He didn't tell anybody he had Parkinson's, including me. He died when he was 52, took his own life, which was terrible. He kept it to himself, never spoke to anybody about it. Went to the doctors by himself. He used to eat by himself; didn't eat with the family because he was worried about his shakes and stuff. I only found out he had it by I was off ill one day from school and I saw a programme about Parkinson's and I said to my big brother, he was four years older, 'I think dad's got Parkinson's'. He said, 'he has, he doesn't want to talk about it'. He was 52 and took his own life so tragic, really tragic.

HARRY - I'm sorry to hear that. Why do you think he did that?

DAVE - I think depression. Parkinson's can cause depression. He never spoke to anybody about it. My mum never used to go to the hospital with him, he went by himself. He couldn't disclose to anybody. He was frightened to be labelled as disabled and lose his job. We didn't have a lot of money growing up as a kid and his job was vital. The whole thing was very sad.

I went public about it. I kept it secret for two and a half years, and I did a World Champion boxing match in Glasgow, a guy called Ricky Burns was the fighter, and I was really struggling, the pressure was building, and I was trying to get my cufflinks on, the shakes were bad, the meds hadn't kicked in, the floor manager was going, 'where's Clarky, where's Clarky, he's got to come on air'. Big live link on the top of the show. I was hiding in the cupboard trying to do my tie up and stuff. I hadn't told anybody I'd got Parkinson's, so it was really frightening. I was there in time to do the link, I nailed it and got it right, but it really it out of me. I was worn out for three days afterwards just the mental stress of it all. My wife said, 'you've got to public about it; you can't hide it anymore'.

So, I wrote an article in the Daily Mail. I got 60,000 messages of support, it was incredible. But the time has got to be right because people sort of mourn for you. It's a very weird situation because you get your head round the fact you've got Parkinson's, and then you tell people you've got Parkinson's, and it's like a second tier of emotion because people come up, 'I'm so sorry. Why's it happened to you?' They're really upset about it, and that affects you. So, you've got to be ready for it, and I think I was ready for it then.

HARRY -And do you think the experience of seeing your father go through that alone inspired you in some way to go a different way?

DAVE - Yeah, everything he did I do the opposite, which sounds a bit weird when your dad's your role model and your hero, in Parkinson's it was all wrong, what happened to him was wrong. But it was different times. He wanted to keep it secret. I did for a while, but going public was the best thing that happened to me. The support I've had has been brilliant. People know now; if they see my walking is not great or whatever they know I've got Parkinson's. So, it's great for me.

HARRY - You say different times, what's been the big change since your childhood to now?

DAVE - I think attitude to any sort of disability. I'm not saying that it's completely right now. I'll be in the pub and someone will say to me, 'I think you should go home now' and I haven't had a drink; I'm just having a bad day with the Parkinson's. You get that look.

My wife's a clinical psychologist so I'm a bit of a case study actually, she says, 'you've got to develop a rhino hide. Don't worry if people stare at you. Just crack on. Just carry on doing what you're doing'. Because Parkinson's can be very isolating, as my dad found out. You can not want to be seen in public. You can cut yourself off. You can stay at home all day. But I make a point, even if I'm feeling bad, I go out, do something, stay in touch with mates. If mates don't ring me I ring them and say, 'come on, we're going for a coffee or something, I've had a bad day'. It's important to keep talking. My dad didn't talk and ended up taking his own life which was tragic.

HARRY -Desperately sad, yeah. You've alluded to it that your workplace was very, very supportive of you. For those people that have this, and are not sure about telling their employer, talk us through the thought process for you and how you came to make that disclosure.

DAVE - I'd had it a while and it was really getting to me, so I told my immediate boss. The thing is you tell somebody and they can't keep it a secret, and he couldn't keep it a secret either, so he told other people, and word got out. In their eyes you can see they know something is wrong. 'Are you all right, Clarky?' I thought they know, they know. I'm a contractor, so I'm not an employee, but the contracts have kept coming, and long may it continue.

HARRY -Have you found there are people who don't understand it or have responded badly since you came out publicly?

DAVE - Before I came out a couple of people on Twitter said, 'what's with the Lego hands?' and stuff like that, and 'what's with the face? Why are you looking miserable?' And one of the leading bookmakers as well tweeted about the way I looked, and said I looked like someone had let off a smell in the studio and I wanted to murder the person who'd done it, and took a still from the TV. And I said, 'that'll be the chronic degenerative neurological condition that will eventually rob me of the ability to walk and talk'. And it got 2 million retweets.

HARRY -Wow.

DAVE - It was amazing. And they gave a sizable cheque to Parkinson's UK and were very apologetic. But it just shows you one person can do something like that. People don't think about the person on the other end of that. I was working for 16 days on the World Championship, done a great day's work, and then someone tweets that and I think, right. Straightaway answered it and it went mad.

HARRY -You've mentioned your wife, and you've got two children as well, how have they responded since you told them that you'd had that diagnosis?

DAVE - We've been very open with the kids from day one really because, again just what happened with my dad, just keeping a secret. And I think it's important that they knew about it. They know I'm getting worse and they know it's very serious, but I'm just dad.

I remember when I was growing up I was embarrassed about my dad coming to watch me play football and stuff because I didn't like to see him hunched up and looking shaky on the side of the pitch; and I'm embarrassed by that reaction now. My kids don't have a choice: I turn up for everything.

I don't work as hard as I used to. I used to do the boxing, the snooker, the darts on Sky, and I was in hotels 123 days one year and I thought this is enough. So, I just do the darts now which is 60-odd days a year. There's the prep and everything and a few other bits and pieces as well, but I'm lucky that I can be in that position. Other people aren't so fortunate.

I spend a lot of time watching the kids and watching them play sports and spending time with them, and I think that's important. On Saturday my son came into my bedroom and he said, 'dad every goal I get this year I'm going to give £10 to Parkinson's UK'. And he hasn't got much money so that's a lot of money to him.

HARRY -Wow.

DAVE - I was really touched by it. Fantastic. And he scored a goal in training and he said, 'I'm going to give £5 because I got one in training'. I said, 'no don't give you money away. Goals in games'. He's a centre half so he's not going to get many goals. Not going to cost him too much.

HARRY -I was going to say, as long as he's not playing up front you're okay.

DAVE - He's no Messi, but it could get messy for him if he scores a lot of goals this year! I don't get away with anything. I can't sit on my bum and do nothing with them. I've got to get out and about. They're a motivating factor: I've got to stay healthy for them. So, I do a lot of exercise, go to the gym, take the dog out every day, get up, get dressed, get out. Every day I do something.

HARRY -Being honest with them like that you must have had to really think about that? That's a big decision.

DAVE - Yeah. My wife actually wrote the paper for Parkinson's UK on how to tell kids. We just did it gently and told them as a matter of fact when they noticed things were going wrong, and they've accepted it really well and it's just part of life now. It's not a big issue for them.

HARRY - That's brilliant. You've mentioned already that the Parkinson's can reduce dopamine and that can make people more susceptible to depression, like your father. Have you experienced that? Are you worried that you might if you haven't already?

DAVE - I come from quite a high level anyway. I've never been one to feel sorry for myself. Depression can get hold of you, and I'm probably down to my last 10% dopamine now. And dopamine is an amazing thing, the addiction you get from gambling and stuff like that, the high you get is a dopamine high. You can feel a bit flat so it's hard to get excited about things, so people can do extreme things when they've got Parkinson's.

I've been lucky so far; I'm not saying I won't get depressed but I haven't been depressed so far. I think part of that is attitude. Part of that is lucky that my chemicals are all working right at the moment. And I just keep busy and don't allow myself to sit and brood. It's all right to have the odd sofa day but just don't make a habit of it. It can be a very isolating dark place Parkinson's if you let it go like that.

HARRY -Yeah. I read your regime. Before you were diagnosed you said you cycled, you jogged, you swam three times a week and you played five-a-side football. How has your routine had to change as a result?

DAVE - I still go to the gym. Dog goes out with me every day, Ruby, so that's important. Great thing actually if you've got an illness, a dog is a wonderful thing. It's excited to see you, loves being around you, gets you out, gets you social. People talk to you when you've got an animal as well. They think you're safe to talk to you, even if you're shaking, looking a bit dodgy, they'll still talk to you because the love of animals. So, she's broken down a lot of barriers. People who don't know I've got Parkinson's I can talk to them about Parkinson's via the dog. She's been great for me. I can just live my life to the full and don't get down.

HARRY -And do you play darts?

DAVE - I play badly. My right hand doesn't work too well these days. So, I've taught myself a couple of things: I've taught myself to write left handed and I can also throw a dart left handed now.

HARRY -Wow.

DAVE - Badly. You wouldn't want to get within five yards of the dartboard in case you get one in the head! But I play occasionally. I'm not very good though.

HARRY - What are the practicalities in terms of having Parkinson's that you have to deal with?

DAVEMeds on time is a massive thing. You can really do yourself damage if you don't take your meds virtually to the minute every day. Drink loads of water when you take your meds as well because it helps the stomach absorb them. I'm on three medications: one's a patch called Neupro which you stick it to your body and it drip feeds your drug all day, which is great for me, keeps me pretty normal most of the day. Then levodopa which is the gold standard one. But that's over 50 years old.

HARRY - Wow.

DAVEHarold Wilson when he was Prime Minister was still using the same drug. It's the one my dad was on. It's ridiculous. So, we need a breakthrough big time. It seems to be very slow the progress.

HARRYWhy is that?

DAVE - Partly where the damage is being done in my brain is an area of the brain called the substantia nigra, which is deep in the middle of your brain, so it's hard to get to. And the brain blood barrier means it's difficult to operate to get in there. But scanning technology, I went on a five test last scanner a while ago, which is twice as powerful as any other MRI scanner. And I just volunteered to have my brain looked at for two hours, which was quite claustrophobic and quite frightening.

HARRY -I bet.

DAVE - Things like that they can see the brain working in great detail. That will help. It needs money. Throw money at it and you'll solve problems. It's incredible.

HARRY - So, with that in mind you're climbing Everest. And this is something that plenty of disabled people have done in the past to raise awareness and money. What made you want to climb Everest?

DAVE - I'm doing Everest base camp, which isn't quite as serious as climbing Everest. But I've always wanted to see Everest, and I thought while I still can I'll do it. It's an 18-day trek setting off in November. Everest base camp is 18,000ft, just short of 18,000ft. The air is thin, 50% of the oxygen of the surface. But I'm going to do it, raise a few quid as well.

HARRY -Dave, how will the conditions of Everest affect you?

DAVE - I'm not sure how the conditions of Everest will change me. Some people say altitude is good for Parkinson's; some people say it's bad. Michael J Fox went to meet the Dalai Lama and said he'd never felt as good as when he was at altitude. I've been to 13,000ft before. I was all right, so hopefully it won't affect me too badly.

HARRY -Where did the idea for that come from?

DAVE - I did the Dales Way, I did coast to coast, I thought I need something else, I need one big challenge to finish it off. This will be my last sponsored walk, because I've written some money out of everyone I can that are alive. I want a fiver from you as well! I just thought one last challenge, and Everest base camp will be the one.

HARRY -Have you been inspired by anybody who has Parkinson's?

DAVE - Yeah, a few people. There's a guy called Freddie Roach who's a boxing trainer, who's trained over 50 world champions, and he's had it for 20 odd years and he still goes in the gym every day, the Wild Card gym. He still goes on the pads of the fighters. He can't speak very well, his gait is not good, but he's doing it. He's still out there and still training world champions and still in the corner for World Championship fights. So, people like him.

And Muhammad Ali. I met Ali twice in my career. The most poignant moment was in 1996 when I was covering the Atlanta Olympics, and I was in the stadium and they didn't know who was going to light the torch, and they passed it on through various superstars, and then Ali came out wearing a white tracksuit and his hand really badly shaking, he could hardly move. I was quite upset at the time because I thought about my dad back in the day. He lit the flame it was just an amazing moment. It transcended any sporting occasion I've ever been to. Absolutely amazing.

HARRY - The Parkiversary, do you mark it in any particular way?

DAVE -I try to do something positive to mark it. I'm a big Bruce Springsteen fan. We were talking about addictions earlier on; one of my addictions is Bruce Springsteen. I've seen him 18 times, follow him around the world. I went to see him in Cape Town. I went to Perth, Australia to see Bruce as well, which is not very environmentally friendly. This year I'm trying to organise a trip to Vilnius in Lithuania to see another of my favourite bands, Orchestral Manoeuvres in the Dark. It can be a very dark day, but try and make a negative into a positive and do something to remember the day in a happy way. I now think of Bruce Springsteen on my Parkiversary. I don't think of crying on Wimbledon Common when I got the news from the specialist. That was a bad day in my life, so make every year after that a good day.

HARRY - With regards to the Parkinson's is there a community, do you feel that?

DAVE - Social media has been brilliant for me. Just the go get it attitude has been brilliant. It rubs off on you, it's infectious. And hopefully there's a bit of me rubs off on other people, my positive attitude helps people to cope every day and think, if he can stand up in front of 10,000 people doing the darts I can do something as well. As I say, those days will come to an end, probably sooner rather than later, but just enjoy the moment, enjoy it while you can.

HARRY - What's on that list then, if somebody was to ask you, how do I cope, what should I do?

DAVE - Live in the now. Always have something in the diary that excites you. Have music on in the house the whole time so you don't get in that dark place. As I said earlier on, you're allowed the odd sofa day but don't make a habit of it. Get up, get out, get dressed - get dressed before you get out, by the way. But just things like that.

People with Parkinson's do amazing things - do something amazing. Walk coast to coast, or just walk down the shops if you've not walked down the shops for a while. That's an amazing thing if you're really struggling - keep going, keep fighting.

HARRY -That's it for this episode of the Ouch podcast. But we love to hear from you so get in touch, on Twitter, @bbcouch, on Facebook we're BBC Ouch, and of course you can email us [e-mail]. See you next time.